A Slight Setback

Hi everyone,

Wanted to give you an update on how I’m doing with the clinical trial at Fox Chase.  The last posts (thanks to Carl for writing them) went into what the trial was all about and my initial experience.  The trial has a series of 21-day cycles that include two consecutive weeks of chemo, using cisplatin the drug I was on when first diagnosed, followed by a week off.  Each day of the 21-day cycle I take a met-inhibitor pill which is the trial drug. This is the drug that is supposed to stop the growth and spread of the cancer cells.

Last Wednesday was the start of my second cycle.  The first cycle had gone OK.  I was really tired  but the introduction of a steroid really helped take care of that side effect.  On Wednesday, we showed up at Fox Chase eager to get the next cycle started. The day started with blood work that came back strong – white and red blood cells were good as was my liver functioning.  Next step was the chemotherapy.  Unfortunately, about 15 minutes after the chemo infusion began I started feeling nauseous. Another 10 minutes into the infusion and more symptoms started to pop up.  I got really flushed.  There was pressure moving up from my stomach into my chest. Hives started popping out.  Not a pretty sight!

Carl pressed the nurse call button and within seconds two nurses were with me. In the matter of just a couple of minutes, they knew I was having an allergic reaction to the cisplatin and had disconnected me from the infusion.  Right behind that came an IV infusion of Benadryl and another anti-inflammatory to calm things down.  Within about an hour, I was feeling normal again.  As we’ve now learned, people who have had cisplatin before often develop this allergic reaction later on when the drug is reintroduced. 

Dr. Denlinger came in to see how I was doing and shared that I wouldn’t be doing back on the chemotherapy.  While she could have “challenged” the drug – put me on a 15-hour infusion with close monitoring and an overnight stay at the hospital – she didn’t want to risk a worse reaction. We agreed.  Instead, she went back and forth with Eli Lilly,  the trial sponsor, and I’m staying in the trial but just using the daily met-inhibitor.

April 21 will be my first CT scan since being on the new drug.  On April 22 we’ll hear the results.  Carl and I are both still optimistic that the drug is suppressing the cancer cells.  My blood test from last Wednesday showed a slowing of the cancer activity from a month or so ago.  While the new drug isn’t killing the cancer that is there, if it stops it from going any further, that would be terrific.  We know of someone who’s been on the pill for over a year and doing well.  I want to follow in her footsteps!

If the results from the CT scan aren’t positive, Carl and I will move on to Plan B. (I feel so grateful that there is now a Plan B!).  We’ll probably reach back out to Dr. Geschwind at Johns Hopkins to plan for chemo-embolization.  He was very positive about the results I could get from that procedure. 

We knew going into this journey that there would be ups and downs.  While the chemo reaction was a surprise at least I’m still able to participate in the trial.  Hopefully, we’ll see some progress on the scan and I’ll continue.  Having a break from chemotherapy isn’t all that bad!

Wrapping up… thanks to all of you for your ongoing care, concern, and compassion.  Your prayers, thoughts, positive energy and encouragement are fuels to keep us going forward with hope.  It’s appreciated so, so much!

Love, Lynn

8 responses

  1. So glad you and Carl are thoughtful researchers. Sending positive thoughts your way. See you soon!!

  2. Jim & Sonja MacWilliams | Reply

    Sending our positive thoughts. You guys are our heros. Stay strong. Lots of love.

  3. Patricia Barth | Reply

    Sorry about the setback…So thrilled that you can continue with the trial. Stay strong and know that so many prayers and lots of love is being sent your way.

  4. Lynn, thanks for the update. Stay focused on moving forward; many of us are quietly carrying you in our hearts through this challenging path you are navigating. All the best to one who is the best. Sending prayers and positive thoughts to you and Carl daily.

  5. Karen Richardson | Reply

    Staying strong and positive is a treatment all in itself! So wonderful that you can continue the trial. Keeping you in our prayers. Karen and Jeff

  6. “Having a break from chemotherapy isn’t all that bad.” I have to tell you, Lynn, that I read that sentence with a mouthful of coffee. The results were quite exciting. All I could think was, “Other than than, Mrs. Lincoln, did you enjoy the play?” Glad to year your optimism is not dependent on perfection. Sometimes it’s a step backward that makes us appreciate the forward progress. And sometimes, when there’s a speed bump in the road, it slows us down so that things happen at just the right time. Grateful for benadryl and good nurses. Grateful for the positive energy that surrounds you. Grateful that there is a Plan B, just in case. Sending you tons of love and healing light. Pam

  7. Heather Miller | Reply

    Hi Lynn,

    Your continued positive attitude is an inspiration to me! If there is anything that I can do for you or your family just let me know. Lots of hugs and prayers sent your way … Heather Miller

  8. Lynn: You are an amazing woman. My thoughts and prayers are with you and your family. Diane

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